As you all know I'm a real newbie to this disease, but I'm learning fast.

I have a big question though: how can I tell a flare from a new permanent condition or just another symptom of something going awry?

As an example when the feet were going numb, prior to going totally numb (separate occasions) the big toes joints would throb with excruciating pain and electric jolts that would be agonizing to deal with... no amount of biofreeze, tiger balm, ice etc would calm it down... then it would subside and the area would be numb and still is... then it happened with the other foot and it resulted the same way and that foot's big toe joint area is numb.

Then other times, I'll go thru the spasms, creepy crawlies and weakness in the right leg for a while and it subsides but no permanent results... but then it'll come back... nothing debilitating just annoying. Or like the ON, it's on and off very subtle but there...nothing so major that I'd think it's a flare. It's like the symptoms/disturbances just keep happening... so are they flares or now conditions to cope with?

So what merits the status of a flare, and what merits concern that it's permanent damage? Is there a difference? Can it be intercepted?

Hope this post doesn't come off as too ridiculous sounding, I honestly struggle with trying not to feel like a hypochondriac to the neuro and yet while I read so many posts here I'm thinking, OMG, that really is something happening that means something! Dang, thought it was my imagination or my worryness!

This is a great question. I have had only three flares but there was no doubt as to what they were. My doctor defines them as any symptom that is one that is significantly worse for longer than 24 hours or any new symptoms that lasts longer than 24 hours. So for exmple: one of my residual symptoms is chronic vertigo. When that got worse for longer than 24 hours, that was a flare. I flared about a year ago; that resulted in my feet and most of my legs going nearly completely numb. That was also a flare. I tend to flare really big and obvious. I know that that is not the case for everyone. It is something you will figure out as you go. If you have any questions or concerns, you should always just call your doctor. My flares, so far, have resulted in permanent damage.

Gretchen gave you a pretty accurate description of a flare. I think of a flare as a new symptom, something that hasn't occurred before, lasting for the 24 hours she talks about...

or a significantly dramatic intensity or increase of an old symptom. Like, I went for a long time with weak legs...but when I'd wake up and realize that my leg was so weak that it could not support me any longer -- that was a flare. The "weak leg" was just a continuation of "stuff" that was going on, and would continue to go on, for a long time.

What you describe sounds to me like "residual" stuff -- stuff that is just there, annoyances, reminders that you have a chronic disorder of your central nervous system, permanent damage most likely, but not so severe that you're significantly disabled by it. Think of a scar on your finger -- you've cut yourself enough to maybe need stitches, a scar is left. The finger still functions..but the area where the scar is "feels funny". Maybe feels numb. Or the finger doesn't bend quite like it should -- bends enough to leave the finger functional, but not "normal". That's sort of what is happening with your nervous system. Signals are still getting through, but sometimes "shorting out", or zapping along different paths, or "hitting bumps" in the myelin, so not getting through perfectly, or causing discomfort, or whatever. Bummer.

...I am not a doctor, nor health professional, and don't pretend to be one, here.....

This is what I was wondering so when the doc asks me how things are, or as he likes to say, anything new... I bring up any new spots of numbnessl, new areas of pain, new symptoms I haven't experienced before and that's a flare of something new.

It's like the last visit, when the right eye acted up, the vision had become impaired for night driving, the motion activity in my peripheal... it was totally new for me and it clinched his dx.

So with most of this (and there's tons more that I don't mention) it's residual effects... is this where the medication might come in and help? Does it alleviate these residuals? Or is medication only good for the new stuff?Fear knocked ~ Faith Answered ~ No one was there! :)

D'awesome said...This is what I was wondering so when the doc asks me how things are, or as he likes to say, anything new... I bring up any new spots of numbnessl, new areas of pain, new symptoms I haven't experienced before and that's a flare of something new.

It's like the last visit, when the right eye acted up, the vision had become impaired for night driving, the motion activity in my peripheal... it was totally new for me and it clinched his dx.

So with most of this (and there's tons more that I don't mention) it's residual effects... is this where the medication might come in and help? Does it alleviate these residuals? Or is medication only good for the new stuff?

It depends on what you mean by "medication". If you're talking about Avonex/Betaseron/Copaxone/etc -- no, they will neither help residuals, or "new stuff". They are intended to slow the progression of the disease..

so it may be that you won't experience lots of flares (new stuff) (which lead to "residuals"). These medications are useful because every time you experience a flare (and even when you don't -- MS has a way of doing it's dirty work, sometimes, without any outward signs)..you risk greater disability (residual effects), so you take these meds to try to "ward off" that from happening.

There's no guarantee, of course. No one has ever claimed that the meds will stop all flares (or exacerbations), or cause any one specific flare to be minor enough that there won't be residual effects. They only "promise" to slow down the course of the disease, to lessen the severity, overall.

There are medications you can take to help with some of the "residuals", or symptoms, or "new things", things that will help with pain, for example, or fatigue, or bladder control, or....

So you'd need to ask about that. Some of the sensory stuff, though -- the numbness, tingling, for example...there's not a lot that can help with that, in my experience.

...I am not a doctor, nor health professional, and don't pretend to be one, here.....

Ok so this is my understanding of it. The scars (hence the name sclerosis) are places where the electrical impulses are no longer going through. That part of the brain/spinal cord is damaged. Once damaged enough, you will have residuals or symptoms. The meds for progression will not treat that. In fact, if I went on how I felt, I would think that the meds are not working at all. But I don't feel that that is the case at all. The meds are trying to stop new damage to the brain and spinal cord. The meds work in different ways but they are trying to balance the immune system so it does not attack the brain and spinal cord.

Specifically the immune system is attacking the myelin sheathing around neurons in the white matter of your brain. This causes those electrical impulses to go haywire and messages do not get through. When messages do not get through, then you have paralysis, numbness, vision problems and anything else that MS patients suffer from. That is why this disesae is so varied. It really depends upon the location and severity of your lesions. Rhonda just posted information that links lesion sites to symptoms.

There are meds that treat symptoms. There are meds that help with pain, fatigue, bladder and bowel issues, spasticity and others. There are also the steroids that can help shorten the duration of a flare. The damage done by a new flare cannot be lessoned by steroids; it is more for comfort and relief of symptoms. Apparently by the time you are experiencing new symptoms, the damage has been done. Even if your symptoms get worse of a course of days and weeks, steroids will only make you more comfortable. That is why many doctors offer steroids as an option. You don't have to take them.

Unfortunately there are no meds that can re-myelinate your brain for you. That would be treatment and cure righ there. Over a really long time (like several months or years) your brain may re-myelinate a bit on its own. For example, it has been a year since my last flare. I am just now getting a decent amount of sensation back in my feet. Messaages are getting through. I know that will never come back all the way and it is part of my residual package now but it is better than when I was just completely dead numb in both feet. Chronic vertigo is also one of my residuals. I have had vertigo so badly that I could not walk but with the help of a nice sturdy wall. I have dealt with it for over two years now. But I must be re-myelinating because I have less vertigo then ever before. I still get it anytime I am in a crowd or there is lots going on and I am looking at things and moving/walking. I am so grateful for this!!

Well this was really long. I hope it helps explain things for you. Keep doing all you can to learn about MS.

Love and prayer,

I just hit submit and I see that Uppitycats has beaten me to the punch!!! Thanks Cat for your post. Mine is going to sound a bit redundant after yours. I have got to learn to type faster .

No redundancy at all Gretchen or Cat... both of you enlightened me quite a bit on the meds... I am constantly dealing with the symptoms and residuals for sure... and that was what I thought that if I was to go on one of the big dog meds it might stop or reverse the effects but now I see and understand it won't... it'll just help stop MS's progression. BTW I printed Rhonda lesion list and related symptoms so I can take it in to my neuro and tell him these are the things happening to me... does anything show on the MRI's?

But my greater dilemma I suspect is going to be the lack of lesion confirmation (I'm still waiting for my appt coming up in May) but all the other confirmations are in place and have been for sometime... so that I just have to figure out what meds will treat what best and still allow me to function at my best.

And new symptoms are cropping up... like today's been a very hard day overall... the right eye was particularly inflamed (larger pupil, more pressure on that area in the socket, the eye feels like it's "bug eyed" and vision is definitely dimmed a bit) - ON. The tics started half thru the afternoon and a mild headache followed on queue. But the weirdest NEW symptom was while trying to work, I was almost passing out as though I was instantly falling asleep! This is in front of my boss at a computer, while I'm typing working and readin... and yet I could feel as though my brain was shutting down and someone was turning the lights out on me... I'd have to get up move around and stretch to readjust but this lasted a good two hours before it finally passed! I was so praying my boss would see me fall out of my chair or some silly thing! (He's very very understanding and would most likely panic and send me home).

And then tonight the left eye is developing a tic... this is a very first time ever. This makes me nervous. Does ON spread?

So being able to define symptoms, residuals and flares is really helpful and then being able to realize what the meds will do for me is good application to me. It's helping me a lot to understand this whole scenario... you've explained it very well. Thanks!

That is how it is for most of us. Only a very very rare few get back to normal during remission. Most of us have lots and lots of residuals that we deal with everyday. And those residuals can really vary as well. Some days my residual symptoms lay low and are pretty quiet and other days they reallly act up and cause problems for everyday life. When that happens, it is a signal to me to get some extra rest. My husband is good about seeing that and reminds me to take care. Also the least little bit of illness or allergies gets the residuals to act up as well.

I can really feel quite awful and it still won't be a flare. It takes some time to figure out for yourself what is going on with this disease.

Thanks all for the infomation. I too am so confused as to a flair or residuals. This is a great thread.I just dont get it. My question, and i dont know if you all covered this, but do you have a new lesion when you get a true exacerbation? Reason being, my flair last year was caused by a new lesion (i just happened to have an mri scheduled when it happened) and it showed. So, i thought this is what happens. Then my last flair, just happened to be around my 6month mri again, and then there was nothing active. So why then was i feeling so bad? I just dont get it. I thought it was a flair.I hope this makes sense. What i mean is, when the symptoms are happening, is it a new lesion or the reactivation of an old one, and why then did it not show up? I hope someone understands what i mean, cuz sometimes i'm not sure, lol.Thanks in advance.LynnDx MS Dec 06, Started Tysabri March 2008, Baclofen, Cymbalta

Well again, I am far from an expert but this is my understanding. You can have a flare when you develop a new lesion. You can also flare on your old lesions. When I flared last year it was on the spinal lesion (an "old" one). I have been told that if you have an "active" lesion that is shows up very white on an MRI with contrast. What I don't know is can you flare and show no activity on a current MRI. One thing seems certain to me, MRIs, as much as they are a wonderful and relatively new diagnostic tool, are imperfect. The brain is extremely complicated and very hard to see.

Hummmmmm. Does this make any sense at all or did I just make you all a bit dummer!? Sometimes I wonder!

Sweetlydia66 said...Thanks all for the infomation. I too am so confused as to a flair or residuals. This is a great thread.I just dont get it. My question, and i dont know if you all covered this, but do you have a new lesion when you get a true exacerbation? Reason being, my flair last year was caused by a new lesion (i just happened to have an mri scheduled when it happened) and it showed. So, i thought this is what happens. Then my last flair, just happened to be around my 6month mri again, and then there was nothing active. So why then was i feeling so bad? I just dont get it. I thought it was a flair.I hope this makes sense. What i mean is, when the symptoms are happening, is it a new lesion or the reactivation of an old one, and why then did it not show up? I hope someone understands what i mean, cuz sometimes i'm not sure, lol.Thanks in advance.Lynn

I think you're putting too much faith in MRI's! People were diagnosed with MS long before MRI's existed. And here's a strange fact: people have died and undergone autopsy (actually, you probably don't want to be autopsied BEFORE you die...)

and lesions were discovered in their brains. The "strange" part of it? They had NO apparent symptoms of MS..or any other problem..while alive (they died of unrelated causes, things like heart attack, or stroke..)

I don't know -- I'm not a doctor, not a radiologist, don't know a lot about MRI's -- but it seems quite possible that you may not have a new lesion that causes an exacerbation..but a return of symptoms that an old lesion has caused. Remember too that people have been diagnosed with MS when no lesions have shown up on an MRI, based on other signs and symptoms the person has.

So lesions -- either size, number, or lack thereof -- don't necessarily equate to having a flare, or exacerbation (same thing..different word). And a person can have LOTS of lesions and few symptoms...or a few lesions in the wrong places, causing serious disability. Or a lot of lesions -- like me, "too many to count" - -that cause all sorts of disability.

So whether a lesions shows up or not, whether a lesion is "enhanced" or not on an MRI, whether a lesion and a flare correspond with each other really doesn't matter much. If you have MS, you have an autoimmune system that, for reasons unknown, has "decided" to attack your myelin, and when that happens -- and the attack lasts for more than 24 hours, and you're experiencing a new symptom (or symptoms), or major intensity of "old" symptoms -- that's a flare, or exacerbation.

...I am not a doctor, nor health professional, and don't pretend to be one, here.....

Uppity said: I think you're putting too much faith in MRI's! People were diagnosed with MS long before MRI's existed.....Remember too that people have been diagnosed with MS when no lesions have shown up on an MRI, based on other signs and symptoms the person has.

I really appreciate this part, Uppity thank you! I seem to be one of those with every symptom and residual except double vision yet no lesions showing yet... so having all this info is helping me figure it out a lot.

I'm glad too that it didn't seem like a silly question... I've read several books already and sort of had an idea but it wasn't clear and the way you all explained it now makes alot more sense! Thanks!

Good morning all, and I would like to direct my question etc to gretchen. I am a bit confused, after reading a couple of your posts. I am hoping that you can help me, as I am very new to MS, and trying to obtain as much information that I can get so that I can have a full understanding of this disease, and ways to deal with things as they may or may not come up.

On April 10th, you posted on the thread "Switching Meds". In this post you were talking about Copaxone, and stated that you feel the best you have ever felt since your dx. You further indicated that you were convinced that the Copaxone was working.

On this thread, on April 21st, you were commenting on the meds, and you were talking about the meds out there to help stop the progression of the disease. So I have to assume that you were referring to the Copaxone when you stated that if you went on how you felt, you would think that the meds were not working at all. But you did further state that you did not think that this was the case.

So this is where I become confused, and I am wondering if you could clarify for me if you are feeling better, or if you are feeling good, and if you are or not contributing this to the Copaxone. I just need to know so to kind of know what to expect from this drug.

I feel great but I don't feel drugged great. It is not like you can feel this med working like you would with a decongestant or something. It does not treat symptoms. But, I do feel so much better. I have felt really awful, really awful with this diease. I have struggled with heading spinning vertigo that caused me to vomit in my bed and kept me from walking. I have had terrible spasticity that caused incredible pain. I never thought I would get to where I felt anywhere near normal. I have had days where I thought I was never going to be able to keep working. My job is pretty active (5th grade teacher).

I have been on Copaxone for just a little over a year and a half now. I made a lot of changes along with taking copaxone. I get regular excercise. I lost weight. I have changed my eating habits. I have changed my sleeping habits. It was incredibly hard but now it is just what I do. It is all part of a new but very accepted routine.

I have gone just about a full year without a flare. I had three flares in ten months when this all hit. I have clearly re-myelinated a bit evidenced by the reduction in symptoms I have had over this last year or so. Despite having lots of symptoms, I am feeling good about the copaxone. If I said anywhere that copaxone would stop the progression of this disease, I am sorry. It will not stop it, it will only slow it down. The other thing you have to remember is that this is MY MS. Everyone has a different version of this. If you are looking for some sort of pattern, you might be disappointed. You want to know what to expect - well that is just it. There is no predicting this disease.

I do feel better but that change has come very very slowly. I know it is from the copaxone but it just feels like healing. The copaxone truly does not do a thing for my symptoms so it is hard to remember that it is doing its job. It is only after a year or more that I can say that I feel consistently better.

Great question Gary, this is my confusion too because I'd like to feel like Gretchen! :) I'd like to be able to sit for a moment and realize just for a little bit that I'm essentially pain free, or my muscles are fighting each other or my legs really feel like they're under me and gonna respond when I think about moving. But like Gretchen said, it's HER MS... and that's what I've learned most is that each MS case is totally unique.

I think that has to do with how we each deal with stuff too. I tend to totally ignore "flares" and symptoms (as much as they can ignored) or just medicate them to a comfort level that I can push thru whatever like a machine... I'm trying now to be more aware of when I'm pushing thru them because I'm missing new stuff or just not ready when I crash. And I'm trying not to crash as much (total exhaustion, being completely wasted to bedrest until the energy returns). And since I see my neuro again in about 4 wks I'm trying to make sure we talk seriously about a proactive plan for this new dx.

I hope everyone with any thoughts or confusion will speak up too, as I'm learning much by the asking for the answers.

I've been on Betaseron for a lot of years now...at least 15, maybe more (I'd have to go digging through my medical records to see for sure when I started.)

I have to say I feel better, since starting it. Am I attributing that "feeling better" directly to the Betaseron? No.

I'm feeling better because -- before I started the B, I was having 2-3 exacerbations a year, each of which caused significant impairment, and it took a long while to recover from each one..only to have another. Now, since starting B, I had just one, about 2 years into starting it, and none since.

Are any signs of MS gone? No. In fact, I've had a slow decline -- I was walking (with forearm crutches) 15 years ago; now I use a wheelchair full time. I have bladder issues that worsen sometimes, seem to recede other times (controlled by medication). I have bowel issues. I have weakness in my limb. My vision goes "wonky" from time to time. And so on.

But I'm not having exacerbations. So I'm not going through those periods of intense flare-ups of symptoms, feeling ill, being hospitalized, having to work my way out of them.

I'm "feeling better" because I can plan a bit better for the future. Not having flares means that maybe I can do something next week..or next month..or next Fall...and not have to worry that I'll be hospitalized with a flare. I'm "feeling better" because, while I still have MS and tons of stuff going on, nothing much new has come along, so I don't have to "learn new tricks" to deal with this disease.

I'm "feeling better" because, while it's only a small bit of control, I've still taken control of this disease as much as I can, doing what I can to slow it down (taking the med), and it seems to "be working".

The drugs may ... or may not...stop progression, or slow progression. As the others have noted, MS is a very peculiar disease/disorder -- we each experience it differently. The drugs (Avonex, Betaseron, Copaxone, etc.) don't treat symptoms; there are other meds you can try for some of those.

One last thing...for me, "feeling better" has come about because I've reached a level of acceptance, of understanding. I know (for the most part) how to balance having MS with other stuff I want to do in my life, so I'm not always fighting the MS so that I can get about my day, but instead have learned to live with it. Which I've done for 25 years, now..and counting...

...I am not a doctor, nor health professional, and don't pretend to be one, here.....

Good morning all - thanks to each of you for your post. No Gretchen, you did not confuse me more, you actually helped me put some of these things into perspective. Thank you.

It seems D'Awesome that you and I are starting the journey together at about the same time. Its is kinda scary to say the least. It is the unexpected that drives me nuts. We are planning to go to Florida for Xmas next year, and my stomach gets a pit in it thinking about it sometimes, as I think "what if". Now I have been on copaxone for about 6 months, and since then nothing new has sprung up. In fact some things are not as bad as they use to be - for instance, I do not get that electric shock thing going on when I bend my head forward. And my knees do not tingle like they did from time to time when I went for a walk. And that obnoxious terrible head fog/spacey/where I am/who am I feeling as all but passed, unless I get too tired, and don't take control of the situation - even then, it does not compare to what it use to be....

So I guess we can work together on this, seeing that we are about the same as far as time of dx (Dec 11th for me)

Uppitycats, your post left me speechless, and touched my heart. I learned just by reading your post that "feeling better" is a perspective thing - it all depends on the person, as to who they are, where they have been, and where they are now. Your definition of feeling good is going to be completely different that what feeling good means to someone else. Thank you.

I stay very positive, and attempt to do all the things that I use to do....I remember a few years ago that my brother said to me - do you ever stop, and do you ever stop smiling. Well before my dx, and going back three years ago, I started to feel not so good, I gradually stopped doing things, the things that I loved doing, the things that identified me as me. I stopped smiling. I was scared to death, cause I knew something was terribly wrong, and no one in the entire world could seem to narrow it down. I lost interest in life, and I think I was to the point of giving up, and then - bang a dx, and I was actually glad to know. Since then, I have a bit of spring in my step, I dream (with some caution) instead of dreading upcoming events, and I have a smile on my face again. I too changed my sleeping habits, eating habits, exerise habits, etc - and take copaxone. What ever it is that has helped me feel better, then I salute it. And I look forrward (again with caution) that I will continue to venture down this trail.

Wow Uppity, you're an inspiration to me, I want to say I pray I grow old and gracefully with this disease so one day I look back and say I accepted it's presence but it didn't become me! You said pretty much everything I'm trying to learn to achieve becos anything else feels like a death sentence. I know I've said it before about "pushing thru the pain" and plugging along like a machine but I'm learning that's not the good thing to do anymore as it actually sets me back light years in stamina to recover from it. It's phenomenally difficult to regain what I lose when I ignore myself and plod on thru as though nothing matters...when every fiber is screaming at me! In that way I have a great deal to learn and temper about myself. Something I pray daily for the understanding and wisdom to figure out.

Gary, you're a couple months ahead of me on the "official" dx... my neuro finally gave it to me in March... but we have to have the Official visit May 23 so I'm still not on any meds yet... I want to make a good choice on one because as with Hypothyroidism, taking my daily Armour Thyroid makes all the difference to living well, and taking the Protonix for GERD makes daily life much more pleasant and the Topamax makes migraines minimal which is a blessed relief!

So... hearing that since beginning these meds you've all experienced improved sense of well-being, that's all I need to hear because I would cherish a day that I don't get those electric shock jolts, or sudden jabbing throbs in my eye, or the pins/needles tinglies in my legs etc... I would love to begin to smile instead of internally checking my body for the pain center and making sure I'm not ignoring a real warning signal or just recognizing is it new or the same old same old? Sometimes it's like a mini-warzone in the flesh that never leaves me and when folks say how are you doing today? I think to myself, do they really really want to know or do I just say, oh, just fine!? :)

So long story short, I really appreciate the input here so much! Much of this will be printed for me to journal and read in my low moments so I can keep the proper perspective on the disease... most of al to realize I am not it, It's just a part of me. :)

Good morning - I chose Copaxone as it was the one that seemed to have to least side effects - ie...nausea, etc. The downside is that you have to take a shot a day, but you get use to it......it has now become a daily routine, and I compare it to being a diabetic. I have everything down to about 30 seconds, in - out, done.

You were dx in March, so you should make your decision quickly and decisively, and get started on a treatment program.

Now as far as getting rid of the electic shock feeling, and tingling etc.....do not be terribly surprised if it does not go away comlpletely. And Copaxone does not work immediately - it could take 6 months to a year before the full effect of the medication kicks in.

Now in my case, yes, the electric shock feeling has more or less gone away, but it is still there in the background. Posture seems to play the major role in this. It is there enough for me to notice from time to time if my posture is poor, and this usually happens when I get tired.

Same as with the numbness and tingling in my hands. It has been minimized, but again it is still in the background. Again it surfaces, not to the extent that it use to, but it still surfaces when I get tired. And it really does suddenly appear in my hands if I stick them in warm/hot water (there goes the dishes - ha)

Now I do not know if it is as a result of the Copaxone - but I would like to think so. Possibly the copaxone has kicked in enough now to slow things down, and give the body a chance to re-myelin - but I am only guessing.

To me, and I am only speaking of me, is that fatigue is the major trigger. When my head starts to get foggy, when my hands start to tingle, etc - I know now that this is a indication and sign for me that I need to grab a nap, or take "5" and when I do, things get back reasonably to where they should be.

Note; I have read that there is no, or very little reaction with Copaxone to other drugs, which might behelpful for you in you decision as to which one to take....

Thank you very much for the recommendation and info. This is what I need to weigh... I'm looking to be prepared when I meet the neuro and this helps alot! I don't have any issues with the daily shots. It's a daily regimen like my other meds so it'd just be part of that. I like the idea of something that I know has a goal I can look forward to. Copaxone is sounding good!

Hey Gary, Nope actually at the other end of the continent almost... Florida. :) Yep, where the heat exacerbates alot of it too.

I've got hubby's health insurance, and doc is holding his breath we don't get the big decline when the dx rolls thru with them saying something to the effect that this is a long term "pre existing" condition so you're really not covered for anything stuff... he says he's seen such nightmares for his MS patients he's very anti insurance cos of it... hates the way ins treats patients. So he does it every way possible to keep tx going good. Even so they rejected the nerve conduction test so I'm making payments on that. :)